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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    Research: GCA & PMR

    The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS....

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • Symptoms

    I am new to this.  I was on 60 mg prednisone for two weeks, went down to 50 mg  Two days ago.   Today, good until 830 pm when I got out of work and was walking about .5 miles to car, got the pain behind my eyeball and base of skull  Also same side still healing biopsy site painful ...

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  • skin problems on prednisone? Am I infection prone?

    Diagnosed with GCA and PMR in August, 2017.   I have had two or three episodes of skin rashes, mainly near my rectum.  The skin surrounding the rectum gets very pink and sometimes painful.  I have never had rashes in this area before starting on Prednisone.  I've been using ...

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  • Is it a flareup or prednisone withdraw?

    Hi all 2 years ago I was sort of diagnosed with PMR or LORA My esr and cpk were extremely high yet my ANA,s were normal. The symptons were extreme pain in my arms legs and feet with stiffness. Started on 60mg prednisone which did give relief then slowly overtime started to reduce. During this time was...

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  • Tapering Prednisone : Increase in OA pain ?

    Hi all, I have bee away for a few weeks, and the wedding went well thank you, my daughter looked lovely. Myself I lasted the week away but with some pain.  My question is has anyone else with OA felt worse pain when tapering down off Prednisone.? I have pain that I never had before or increased...

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  • Curing PMR naturally

    Hi, Has anyone tried successfully to cure PMR without medicine, just by vastly improving the diet? I'm trying it and I would like to know of any success stories. Thanks

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  • Visit with Rheumatology

    Just saw my rheum.  She is diagnosing PMR and GCA due to positive response to steroids 60 mg last two weeks.   We are going to go down by 10 mg every 2 weeks til at 20 mg then slower from there if symptoms I go back to the previous dose without symptoms... added bactrim 3xs a week to prevent...

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  • Had Cortisone Injections done

    Hi all, well my last post was about 2 months ago and I asked advice on the Cortisone Injections in my facet joints... I went ahead and had them done on the 5th October, he did 2 in each side. So far they are working at I would say 60% less pain, at least now I can stand and walk for more than 15 mins...

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  • Sixteen years and my PMR has now gone pearshape......

    Having had PMR for about 16 years , the last 5 years mostly on 5 mg of a morning, except for some minor flares that have been nipped in the bud by doubling the daily dose for a maximum of 4 days, I now find I am starting the long haul of reducing from 20 mg daily. I am saying how could this have happened...

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  • Understanding Rheumatologist deptartment

    just wanted to share with you all, I received a letter to change my next Rheumatologist appt, I rang the department to make sure I would be seeing the same consultant, whilst I was on the phone the nurse gave me a telephone number of the specialist Rheumatologist nurses, if I had a flare instead of going...

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  • Stomach Protection

    I have not been on the forum for a while.  I was diagnosed with GCA in March 2016 and managed to get down to 3mg Prednisolone by September 2017 - a nightmare of side effects throughout from Prednisolone, Omeprazole and Ranitidine.  Unfortunately I've had a flare and was put back to 20mg...

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  • Coughing up blood

    Hi everybody just wondering if anyone on pred is coughing up bit of black blood I started to cough up black blood about a couple of months ago thought nothing of it as it was just once or twice but this week it been every morning and sometimes in the night I've had to get up with acid reflux I take...

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  • How I manage the pills I make a calendar

     I make a calendar with the doses based on that nearly stop slow method.. Each day has the dose that’s necessary for that day. Each week has a color code.  The weekly pill boxes seven days each have corresponding colors to the weeks. I always keep the different doses of prednisone the different...

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  • PMR and Fibromyalgia

    I have been diagnosed with PMR and Fibromyalgia. It is hard to differentiate what pain and stiffness is which. Anyone else diagnosed with both? I am always extremely fatigued, stiff, painful and unable to do very much I used to. I try to walk, ride my fat tire bike, and do some chores. I have a tremendous...

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  • The blues....

    Hello Lovely Community After an idiotic mistake in dosaging And a roller coaster of ups and downs, I am back on 10 mg of pred. after a burst  to 30 25 20  a month ago, due to return of symptoms , including headaches. I was able to completely enjoy my daughters wedding on that dose which was...

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  • PMR or something else

    Hi After 3 years on pred, reducing slowly I got down to 1mg but was still experiencing pain, I wasn't sure if this was PMR related or not. .Around  6 months ago I stopped taking pred altogether, the pain hasn't got any worse and it isn't the same pain as I had when I first started...

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  • Slow taper no pain but sweats and some palpitations.

    I am on 8.5 tapering to 8.25. I’ll get hot sweats (too old for hot flashes) and occasional palpitations. Over my lifetime I’ve had palpitations which were evaluated and have no other symptoms like dizziness or weakness. BP is good., Is this common with pred tapering- I’ve read some people have this with...

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  • Is Pred or Methotrexate making my hair curly?

    After about two months on Prednisone/high dose for GCA and 12.5 mg of methotrexate per week my straight hair has gone curly.  This does not please me!  Will it go straight again when I'm off the drugs?  Which drug is doing it?   Thanks for your help!

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  • Side effects of Prednisone

    I was diagnosed with PMR and GCA 11 months ago. Still on 20 mg Prednisone but seem to have several side effects. My face looks puffy especially my cheeks plus I have put on weight Not responding as well as my Rheumotologist would like. Was wondering if anyone else has suffered from side effects and do...

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  • stupid me

    why did i let the doc talk me into dropping my last 2 mg so quickly.  when i knew it was wrong.  he wanted me off my last 2 mg in 1 month. and dropped my  prescription to 1 month supply.   i felt the pain coming back inside  2 weeks.   so booked some bowen treatment....

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  • What is considered a flare?

    Hello I'm looking for some feedback on what course of dosage I should consider. I have been on prednisone since early March 2017, I believe I've lived with pmr for several years without a diagnosis. I was started on 15 mg and immediately felt relief. Was reducing slowly until three months...

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  • Not getting anywhere!

    Hi everyone, Well it’s been 2 1/2 years since first visiting my GP in screaming agony , he believed I had PMR and started me on predisolone as normal (40mg a day) which certainly did the trick. Eventually got to see a Consultant Rheumatologist who said I had reactive arthritis and it would go after about...

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  • How long to stay at 15 mg

    Hi, Hope you are all as well as you can be. I could do with some advise, diagnosed May 16, increased and decreased over the months. I had got down to 10mg, the death of my father recently had my symptoms through the roof. I was advised to increase to 15mg which I have done for 3weeks. I am concerned...

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  • Lyrica

    I have had PMR since August 2006 and started on 15 mgs of Prednisone. I have tried to reduce the dosage twice, 1 mg reduction monthly and each time I have got down to 9/10 mgs the symptoms have come back and I gone back up to 15 mgs. The last occasion, the increase did not get my symptons under control....

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  • Skin Irritation

    Hi All, just a little 'delicate' subject really, I've been walking a lot lately to try to stay supple and hopefully shift a few pounds of steroid weight. But what I've noticed now is I have chapped my skin between the cheeks of my bottom! It's not sore or painful, but it looks very...

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  • Help, Pain in Hip, legs, back, Do I Need more Pred?

    I started w/ PMR 2 yrs ago, have tapered to 3 once before with a flare, now recently have tapedered to 2mg.  I can move my arms very freely, but have many other aches, as above.  My MD just told me I don't have PMR any more due to lab tests.  I saw my orthopedist today for ain in hip...

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  • upper body pain

    My friend who is on her 7th year of PMR and down to 5.5mg  met someone today who was diagnosed with PMR  3 weeks ago and started on 8mg!!  This sounds unbelievable to me.  She is already down to 6mg and feels ok.      How can this be?  She said she had...

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  • Knots of muscles

    Hello everyone sorry to be a pain , since I tried to reduce pred on the dsns way I have never been pain free or nearly as comfortable as I was before I tried to reduce but for the last 3 days I have had a knot of muscle in my shoulder just below the neck , I have tried everything I can think of to ease...

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  • Fighting a flare - boost to 20mg for how long?

    So, I think I have been fighting a cold and my blood test showed my CRP has gone from 12 to 18.  Experiencing growing inflammation PMR pain in shoulders and hips.  I am currently on 16mg since the summer.  3 years in - I got down to 5mg last November too quickly and flared horrendously....

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  • Normal inflammatory markers but continuous arm pains !

    Hello all. Curious to understand why my arm pains(and sometimes back of thighs too)  very often stay with me all day and have done so since reducing from 10mgs in January. I occ' get tender wrist joints and stiff hands. also 'tingling muscle sensation' on calves. CRP/ESR have remained...

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  • Anyone with ESR of 1!

    Was surprised to see my ESR this month had dropped to 1 from 4.  Anyone else have this reading? Not that I am complaining - just interested.

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  • Fellow PMR sufferer

    I went to a party last night and by accident sitting outside to cool down because of sweating, one of the male guests said he was on Steroids ( Predisolone) funny  i am also on the same drug, I have PMR he said he did, but for a year he was told he had Lupus, when he was not getting better he paid...

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